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Giving Up a 3-D Printed Prosthetic for a Different Vision of Perfect

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Giving Up a 3-D Printed Prosthetic for a Different Vision of Perfect

By Catherine Campbell May 17, 2015 8:21 amMay 17, 2015 8:21 am

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Credit Catherine Campbell

A few weeks ago, I awoke one morning at 7 a.m. to a flood of messages in my email inbox. All 48 messages linked to a new video that had gone viral overnight. In the video, Robert Downey Jr., star of the Iron Man movie franchise, presented a customized 3-D printed bionic hand to a boy named Alex Pring, one year younger than my son.

Each email said the same thing: “This is amazing! Immediately thought of you.”

My 8-year-old, Thaddeus, was born without his right hand. And as a mother wanting every opportunity for her child, I had started exploring prosthetic options for him when he was a toddler.

Since he qualifies for state disability, Thaddeus has been lucky to receive access to an excellent team of doctors, occupational therapists, prosthetists, and state-funded basic hand models. When he turned 5, he was overjoyed to be fitted for his first prosthetic: a Hosmer model arm that he wore with a holster and that offered a pincher “hand” grip. He looked like some mini noir-novel detective, wearing the holster over his Pokemon T-shirt. When he shrugged his shoulders, the pincher hand mechanically opened and closed.

With the Hosmer model, Thaddeus learned how to pick up heavy objects, ride a bike with both “hands,” and balance better. But it didn’t last long. The prosthetic was too hot for him to wear even in the winter, and the holster rubbed too hard against his shoulder. It was highly uncomfortable and hard to turn certain ways to get a more realistic grip on items. He abandoned it after a year.

Last fall, a professor friend of mine and I started exploring the more affordable and customizable world of 3-D printed prosthetics, which held huge promise for Thaddeus. He saw some of the robot-like pieces and immediately got excited.

My friend and I picked out a blueprint that matched my son’s specific needs and slowly started working on it in our spare time. He had access to his college’s 3-D printing lab. It would be manual, not electronic, to start. And it would be a long road, but held a huge price difference of $50 versus $5,000, and a lot more design options that kids would like: cool colors, superhero aesthetic additions, breathable materials, even lights.

When I mentioned this project to friends and family, our community rejoiced and begged us to keep them updated on the process. We printed out the initial pieces and kept going.

Three-D printed prosthetics for children hold great potential — and they’ve received great press. Hundreds of designs are uploaded every day and shared across the Internet. A “Handomatic” web app exists on the ever-growing e-Nable volunteer site; simply enter your measurements and generate your own customized files to print pieces on a local 3-D printer and start the process. Caught up in the waves of technology, I became an evangelist for 3-D technology and medical design.

Local journalists had privately reached out to me, asking for an exclusive human interest piece on Thaddeus and his new 3-D prosthetic once it was finished and fitted. Family had brought it up on vacations. Friends had constantly messaged me on Facebook.

Later that morning, when I showed Thaddeus the Robert Downey Jr. and Alex Pring video, I already had visions of him learning how to cut steak with a knife in his new robotic fingers. “Isn’t this great?” I said, smiling. “That’s going to be you very soon!”

We were sitting on the couch, and he turned toward me. “I’ve been thinking about it,” he said. “And I don’t want a new hand.”

“But why?” I was devastated. All that time, research and enthusiasm. He was throwing away a chance to have a five-fingered hand? He was quiet for a moment, then started to explain his three reasons.

First of all, he said, he didn’t want to lose his sense of touch. “I don’t want to lose the way things feel.” This caught me off guard. I hadn’t thought of how much he could physically feel at the tip of his wrist, how stifled it was under something else like plastic.

“I can figure out how to do stuff my own way.” It was true. Thaddeus had figured out how to leverage his arms, feet and neck to open jars, marker and pen caps, and even play baseball. “My brain just works different because of my hand, and I think that’s a good thing.”

I nodded in agreement.

“And my friends like me just the way I am,” he said. If he started wearing a new hand, he explained, it would draw more attention to him — the kind he didn’t want. “I don’t think kids would be my friend because of me. They would just want to play with my robot hand.”

“So, is that O.K.?” he asked. “That I don’t want a hand?”

I hugged him tightly. For eight years, I had focused on only what was lost with my son. What was missing. What was less than, and what was separated from him. And during that time, he had seen what was there to stay for his lifetime — an arm that simply ended at the wrist — and the possibilities that could grow from that, even if those possibilities didn’t have five fingers. As a mother, I had wanted to add to him, because I wanted the best for him.

About

We're all living the family dynamic, as parents, as children, as siblings, uncles and aunts. At Motherlode, lead writer and editor KJ Dell’Antonia invites contributors and commenters to explore how our families affect our lives, and how the news affects our families—and all families. Join us to talk about education, child care, mealtime, sports, technology, the work-family balance and much more